Making treatment choices

The most appropriate type of surgery and treatment for each person depends on the size of the tumour and any spread of cancer.

Here women we interviewed talk about their experiences of making treatment choices.

Some women chose to have a lumpectomy and discussed their decisions. Several explained that, because it was difficult to make treatment choices, they relied on the recommendations of the medical staff. One of these women said she did not know how much of her breast would be removed but trusted the surgeon's expertise. Another described the treatment choices open to her and opted for a lumpectomy and partial reconstruction, as well as participation in a clinical trial.

So the Friday the specialist came out to see me and she says' "We can either take you back into hospital, do another operation. "We will open it up again and remove more of the tissue, where the lump was and open up under your arms." It's what they call a wide local incision.

And she explained it all to me. She said' "Then if we take some of your lymph glands away. If they come back the cancer has spread." She says' "It will be a course of chemotherapy and radiotherapy and you'll go on tamoxifen for a good maybe five, ten years. "Or you can have a mastectomy. Whereas probably if you have a mastectomy it will just be a mastectomy. You probably won't need any further treatment."

And I thought' "Mastectomy. That's really drastic. To take my breast away for this little, this little lump?" It was only the size of a pea but it was getting bigger, it had been getting bigger but it still wasn't big. I thought that was a bit drastic.

And she said her advice was that, just to go back in and just take more tissue away and do the wide local incision. And I said' "Yeah, I think I'll go for that." I asked my daughter in Germany her advice as she saw it. She says to me as well' "Yeah mum go for that. I think a mastectomy is a bit drastic."

So I decided yeah, I'll go for that.

view profile

Profile Info

Age at interview:

27

Sex:

Female

Age at diagnosis:

24

The strange thing was when, because they didn't know how much it had spread or anything, they don't totally know what the whole situation is until they've opened you up.

So they didn't, when they said' "Oh we'll take you to surgery," but they didn't know how much they were going to have to remove.

So he said' "Well, would you like an implant?" And I, yeah I didn't know what to think about that.

I thought' "I don't want an implant. I don't want something else in my body." But I didn't know how much I was going to come out with and that was a strange feeling because you just didn't know what you were going to wake up to.

But I just said' "Well, just make your decision. Obviously if everything's got to go then do something but otherwise."

And, you know, they wouldn't know how serious it was either until, until then so. Yeah, you sort of felt like you were going into the unknown a little bit.

Well they, I didn't decide on any treatment because I suppose I just didn't know, I wouldn't have known.

I mean perhaps you can know more but I certainly wasn't in any state to have been, to have even begun to think about the different.

I needed the security of thinking' "They know what they're doing," so I didn't even question that.

view profile

Profile Info

Age at interview:

34

Sex:

Female

Age at diagnosis:

34

And he explained the different options that they would have.

He said' "Because of where the cancer is we can do a wide local excision or we can do a wide local excision but take more tissue and do what we call a mini-flap operation, which is slightly re-constructive, and push some shoulder muscle round into the area. Or it might be a case of having to remove the breast. Now, all of those three options are open to you."

And I looked at him and I said' "Well what gives me the greatest chance of survival?" And he said' "If there was one option in there that would give you the greatest chance of survival I would tell you, but all three of them have an equal chance."

And I sat there and I thought' "Well this is a bit like Hobson's Choice really. I just want the cancer removed." And I said to him I'd go for the second operation.

Was that with a bit of reconstruction?

Yeah.

And he explained that, you know, there was different types of chemotherapy and that there's a three drug and normal standard, and then there's the four drug which has become the new standard.

But there's also an American drug called Tact, I think, being tested or something like that and what did I want, the options.

Again it was like these are the options.

Yeah a clinical trial and I thought well I'd rather go with the four drug because you know they give the American drug to people where it's secondary breast cancer.

One woman, who was pregnant when diagnosed, discussed the considerations important to her when choosing her treatment. Another, who had a lumpectomy, said she would consider having a mastectomy if she had any further problems. One woman had looked for more information before deciding to have a mastectomy rather than a lumpectomy.

Obviously it was a slightly unknown factor due to the fact that I was pregnant. So what they wanted to do was get me into hospital for them to help me give birth to [my son] as soon as I could.

And again we had all the options explained with the birth as well. That they would try to induce me but I would probably have to have a caesarean because the pregnancy was quite early. And then afterwards they wanted me to have time to recover from the birth and then have the breast operated on.

On 14th July I had a lumpectomy. [My husband and] I again had discussed it quite openly and said that if I needed a mastectomy or even a double mastectomy that we were quite happy for the doctors to do that. We gave our consent for that because at the end of the day obviously you know my health and being there for [my son] in the future was the most important thing.

view profile

Profile Info

Age at interview:

59

Sex:

Female

Age at diagnosis:

56

The other issue was the surgeon, on giving the bad news, said' "Now you have two options' either a mastectomy or a wide local excision." And he said' "It's your choice."

And we went through the reasons for each.

I can't remember very clearly at the moment but I remember I had Christmas, the whole Christmas period, to think about this. And thank goodness for e-mail. I was able to e-mail my specialists where I'd had my previous operation and said, you know, I wanted their opinion.

And again the woman surgeon said some very sensible and sound, gave me some very sound advice, which was she couldn't say categorically which way I should go.

She said experience showed, research showed, that in fact in this particular kind of case mastectomy and wide local excision were of equal benefit.

But, once I had made the decision, not to go back on it, not to think about it. Just forget and move on. You know, make the decision. Which was very, very good advice because it's no good thinking' "My God, have I decided on the right thing?" And that was a lot of help.

Some women chose to have a mastectomy. Several felt that it might lower their chances of a recurrence. Others said they also wanted to avoid further treatment such as radiotherapy and chemotherapy. One women, who opted for a second mastectomy, mentioned all of these reasons. One woman preferred to have a bilateral mastectomy because it might reduce the chances of recurrence as well as any problems with posture and weight.

Yeah now he wanted to do a lumpectomy, because I had a very small lump.

And I said' "I think actually I'd prefer to have a mastectomy." And he said, well, he would leave it entirely to me. He didn't mind what he did, but he was just recommending the lump and that I should go away and just think about it. He didn't need to know in advance.

I would turn up in the theatre and he would then would be told what I'd decided, which I thought was a bit surprising but anyway that's what he said.

And the reason, the reasons for going for that I think were, I think if I'd had the lump I'd be a bit kind of concerned that it might recur. Whereas if there's no tissue there for it to recur in, it would make me feel happier anyway. I mean I know it still can recur, even if you have had a mastectomy, but I just felt it would make me feel a bit happier. So that's really why I went for it.

It also meant that I wouldn't have to have the radiotherapy, but that wasn't actually a reason for it. It was just kind of a side issue really as part of it. So that was that.

view profile

Profile Info

Age at interview:

45

Sex:

Female

Age at diagnosis:

44

I decided to have a full mastectomy because I wanted to give myself the best possible chance. So that was to get rid of all the breast tissue which meant that if there was, if there wasn't any breast tissue there, there wasn't much of a chance that anything could grow back.

And possibly also avoid radiotherapy by having the full mastectomy. And I did actually avoid radiotherapy, so that was good.

And I did have those ten days or so to think about it, and not once during that time did I waiver from that decision. If I was going to be deformed then it was a case of "well let's be properly deformed, not do half a job".

And I did think to myself that it would be so much easier to fit a prosthesis onto the flat chest wall, as opposed to trying to fiddle around with bits and pieces, trying to get round half a boob type of thing.

So that was, you know, another consideration.

view profile

Profile Info

Age at interview:

68

Sex:

Female

Age at diagnosis:

59

But he says, the surgeon came and seen me, he says' "You don't have to get your whole breast off," he says.

"It's just we're going to cut through this lump and take it away."

I says' "No." I says' "I want the whole breast off."

"Why?"

I says' "Because I don't want radiotherapy and I don't want chemo," I said, "and I'd be happier if you took the whole lot off so it will balance me out."

So whether he was pleased about that or not I don't know but that's what I wanted so I got that done and that was in 1996.

Did they try to change your mind?

Yes they did, aye, aye they did. They said it was so silly.

I says' "Well what's more silly is having one off and one just half there." I says' "No." I says' "And anyway I don't want the treatment, just take it all off."

So that was the answer they got. But I demanded it so got it.

view profile

Profile Info

Age at interview:

70

Sex:

Female

Age at diagnosis:

70

Background:

Anyway it was arranged that I should have surgery as quickly as possible and I opted to have both breasts removed.

This was the one that was first affected.

But I thought, after I'd had a bone and liver scan and discovered that I was clear, the bone scan and the liver scan, I had no secondaries.

But I did have bulging, you know, discs in my spine. And I thought to be lop-sided, one heavy breast, because I was no shrimp, one heavy breast and a gap, this was not a good idea.

So I talked to my consultant and he agreed that if I wanted the bilateral job done he would do that because a) I was concerned about the weight on my back and my posture and b) maybe it was a). I'm not sure. I wouldn't have a moment's peace of mind until the second breast. You know I'd always be afraid it was coming back. In the event I was right.

I didn't have a cancer in this breast but early, well they called it a sclerosis, early cell changes. So it's no bad thing. It's made the development of a real, you know, tidying up my appearance much easier.

Some women explained why, in their cases, there were no treatment choices involved. Because of the size of the tumour and type of cancer, a mastectomy was the best option (see 'Mastectomy'). Several women didn't want to make a choice because they knew little about the different treatments. One of these women had a mastectomy over 15 years ago and explained that, although lumpectomies were uncommon then, she wouldn't have wanted to make choices about treatment.

And I know I was recommended a book to read afterwards on breast cancer and it said if you're told you're going to have a mastectomy ask for a second opinion.

I found that amusing as I'd already had mine when I read this. But I didn't think of asking for any other treatment or anything. I just took it that doctor would know, or the surgeon would know best, and I never sort of knew that there were different treatments. But I did find out, we had a talk from the breast surgeon and they sort of divided the breast up into sections and mine was right near the nipple. And apparently that area they prefer to do a mastectomy anyway rather than just a lumpectomy.

So I was quite relieved about that. I thought' "Oh well, I did have the right treatment then," you know. And I was grateful because really it's a case of a gift of life more than anything. So I'd never ever think that a surgeon was giving me the wrong treatment.

I think it's difficult for people nowadays if they're asked which sort of treatment they like because it's quite a responsibility. And often people, although the surgeon explains, I think it's often people feel they'd rather just be told what the surgeon would like to do.

Apparently nowadays that is the choice, well it is in our breast clinics - that they can have a choice of just whether they want the whole breast off, whether they want a lumpectomy, or whether they'd like to leave it to the surgeon to think what he'd like best.

And I'm sure I would leave it to the surgeon for what he thought was best if I had choices like that.